Participation in clinical research is difficult for individuals with neurodegenerative conditions due to impaired mobility, cognitive impairment, and rapid progression. Additionally, access is limited to those who live near clinical research centers, further reducing sample sizes in rare disorders. Addressing these challenges among those with atypical parkinsonian syndromes is essential to better characterize the diseases and evaluate experimental therapeutics. Video-based research visits may represent an option to reduce burden and expand the reach of clinical trials in this population.

We conducted a study of video-based research visits in individuals with atypical parkinsonian syndromes enrolled in the Michael J. Fox Foundation’s Fox Trial Finder. Participants completed a real-time video-based visit with a remote clinician evaluator who was blinded to the participant’s diagnosis. The visit was recorded and subsequently reviewed by a second blinded evaluator. We evaluated diagnostic concordance between the independent evaluators and assessed the accuracy of self-reported diagnosis in Fox Trial Finder. We assessed participant satisfaction with a survey.

We enrolled 45 individuals with atypical parkinsonian syndromes, and 44 completed the video assessment. We demonstrated excellent concordance in diagnosis between the evaluators (κ=0.83) and good reliability of self-reported diagnosis (κ=0.73). Diagnostic concordance was highest among those with a self-reported diagnosis of progressive supranuclear palsy, and lowest among those with a self-reported diagnosis of corticobasal syndrome. More than 90% of participants were satisfied or very satisfied with the convenience, comfort, and overall visit.

Video-based research visits are feasible and reliable in assessing individuals with atypical parkinsonian syndromes. They represent a promising option for reducing burden and extending the reach of clinical research in individuals with these rare conditions.